The Advice I Would Have Given Myself When I First Became Ill

Recently, I was asked, in a wonderful chronic illness group I’m a part of, what advice I would give to someone with chronic illness. Giving advice to people with chronic illness is tricky. Chronic illnesses are all so different; even two people with the same illness can react very differently. Some people with hypermobility disorders like I have are running marathons; others struggle daily even getting out of bed. I am somewhere in the middle, though even that varies day to day.

And most people with chronic illness are no stranger to mostly bad advice. I haven’t heard too much personally; I’ve been lucky in that regard, but many of my chronically ill friends have heard some doozies. “Just think positively and your illness will go away!” “You need to be doing yoga!” “You need to take this supplement I just happen to sell!”

So, instead, I framed the question as what advice would I have found most beneficial to receive back when my chronic illness journey began. It’s taken me a while to learn this, but the number one thing that helps me in my chronic illness is simple in theory, but difficult in practice: get to know yourself. Specifically, get to know your whole self, including and especially the illnesses that are a part of that self.

I always thought I did know myself. I’ve always been fairly introspective and self-aware, often too much so – to the point where I would get stuck in my own head.

But while I knew a lot of different parts of myself, one part of myself I never truly got to know was my ill self: I never truly thought about how my chronic illnesses were a part of me, and integrated them into my experience.

I was treating my illnesses like they were something external. Because of this, I often got down on myself whenever my illnesses affected me. I treated it like it was something I could overcome, and since I wasn’t overcoming it, there must be something deficient in me.

Every time I got a flare or my low immune system made me catch another illness, the way I felt about my illnesses would rear its ugly head. It was clear they were affecting my self-esteem in such a negative way. I hadn’t accepted that my illnesses were here to stay, that they were a part of me, and because of that, I was making myself more miserable than the illnesses were.

It was clear what I had to do: I had to learn to truly accept myself, and know myself, and a huge part of that was accepting all my illnesses, all my chronic conditions, as part of what makes me who I am.

There are two things acceptance didn’t mean, so I want to make that evident, because acceptance can sometimes get blurred with these two things. Acceptance didn’t mean liking my illnesses, and it didn’t mean giving up, either.

I don’t like that I get migraines and joint pain every day. I don’t like how easily I get fatigued and out of breath regardless of how long I work to build endurance. I don’t like that I have daily allergic hive reactions to seemingly nothing.

And I’m not just going to lay down in defeat and not try to minimize the side effects of these conditions. I’m not going to give up taking the medications that help me, and I’m not going to give up looking for other ways to manage my conditions.

What it does mean is that I’m no longer treating my illnesses like something external, something I can overcome, or a character flaw. I’m treating them like the parts of me they are. They are as innate in me as my hair color (…when I’m not dyeing it) or my eye color or my height.

I could every day get down on myself for being 5’11”, but no amount of self-loathing is going to make me 5’2″. I am tall. I have spent most of my life accepting that I am tall, and conceptualizing myself as a tall person. My height has given me some natural limitations through my life.

And now, I’m trying to think of my illnesses the same way I have always thought about my height. I have Chiari malformation. There are things this limits. I need to avoid back of the head contact. I get many different kinds of headaches and migraines, which limit some social situations. I require more rest than a lot of people. I have to do things in small pieces (especially housework.)

These aren’t things to overcome, like I’ve tried to do in the past. They are just realities of who I am. And instead of fighting who I am, I am learning how to work with who I truly am. I am learning how much I require pacing in my life, and better pacing my time and balancing rest and work.

Accepting my illnesses has helped me know myself a whole lot better, and I only wish I would have gotten to know this me, the ill me, the full picture of me, earlier. Because honestly, this me is pretty great. She is incredibly empathetic. She knows what it is like to struggle, and can pick up on others struggling. She is caring, and a good listener. She is kind. She is smart, a quick reader and a great writer. She is a loving, devoted mom, wife, educator and caregiver. She is an interested, eager to learn student. She walks in her faith and aspires to grow more in it daily.

The Mighty Asks

I am a chronically ill mom, educator, champion for after school programs, writer, and aspiring novelist. I have a number of conditions, including Undifferentiated Connective Tissue Disease and Chiari Malformation. You can follow my novel by following my blog, writerkatgn.wordpress.com.